Saturday, August 30, 2008

Voices and stories: One day last week, in my office

The following quotes are not verbatim. I took some poetic license. But they are pretty close.

"I am 16. My body is has numbness and sever shooting pains. It is getting worse. My joints and muscles hurt. I am dizzy. I passed out. The cardiologist did a million test and said I have a low blood pressure. He put me on medicine, an adrenal like hormone to raise my pressure. The neurologist spent 7 minutes with me. 'Sure its Lyme: not'. 'Everyone thinks they have Lyme these days. It must be the latest fad. The media has got people confused and misinformed'. He said I suffered with a psychological problem, anxiety. He was rude and offered nothing. He sent me back to my primary care doctor. My pediatrician had no idea what's wrong. I asked for a Lyme test. No. It's definitely not Lyme disease. Doctor can you help me?"

" I was bit by a tick 2 years ago. I had the classic bulls eye rash. The doctor put me on Doxycyline for three weeks. I still had a fever and flu like symptoms. The rash wasn't gone. He said that's all I can do for you. I saw three or more other doctors; can't really remember. I went to the ER three times. Lyme tests were done. They were always negative. My body is racked with pain. I have overwhelming fatigue. I have headaches and dizziness and no sense of balance. My memory is shot and getting worse. I have had three spinal taps. The first two were normal. The third time they said I had meningitis, but it wasn't due to Lyme. Along the way I received two more three week treatments with Doxycyline. The same line was repeated: 'That's all we can do for you. Sorry'. Someone said it can't be Lyme because you would have been dead by now. The Doxy didn't work at all. I haven't been able to work. Money is tight. We called three Lyme clinics; they wanted $3,000.00 dollars up front to see me and send blood work off to California. I heard you might be able to help me..."'

" He just got out of the hospital; a big fancy University hospital. Docs there couldn't figure it out. He suddenly became weak and passed. He was confused. It has been going on for years. The spinal fluid was sent for Lyme antibodies. It showed some bands: IgM 23, IgG 39 and 41. Not enough to call it Lyme. Nonspecific results. He is an engineer, was brilliant. His memory, concentration and thinking is deteriorating. His body hurts. His joints swell. He has numbness and tingling. The headaches are getting worse. He is getting weaker and drops things. His balance is way off: he falls. He has trouble swallowing. They say its not Lyme. They are trying to figure it out. They think it might be an inherited nervous system disorder or a complication of cancer. They checked for AIDS. It was negative. I asked if they were sure it wasn't Lyme? They copped an attitude and looked at me like I was crazy. OK, they gave in and decided to humor the neurotic wife. They gave him some oral Doxycycline. It seems to have helped a little! My husband is an avid outdoors man: loves to camp and go fly fishing. He has had some tick bites over the years: no rashes that we know of. What do you think. Is there any hope? I am worried that he is dying."

24 comments:

It's interesting to me that the patient 3 had a CSF WB done at all. I came up against resistance requesting the WB-- they just wanted to do the PCR and ELISA. The nurse of the neurologist was resisting my request for WB, and I said to just ask the doc. The doc agreed to let me have it, then when the nurse spoke with the ID doc's nurse, she removed it again! So I had CSF drawn and no WB.

When it comes to CSF I believe there is NO test that is FDA approved for in vitro diagnostic use. The only approved test for lyme at all is an FDA approved WB done on serum. PCR is not approved at all-- yet when they have the CSF and an opportunity to test this less readily available fluid, they don't do all testing. It's silly.

In europe they seem to believe that oligoclonal bands in the CSF are indicative of CNS lyme, but here docs think they only are of use in MS. I wish I had had the bands done.

The FDA hasn't approved much. A monied interest has to petition the FDA for their "blessings" afterperfoming expensive trials. It has to be something patentable. $$$ Capitalism.

The IDSA must be taking stupid pills. Did I say that? YES: patients need to be continued on serious doses of oral mediines after IV therapy. And...they need longer courses of IV therapy.

Of course if chronic Lyme doesn't exist how do they explain Fallon's findings? You can't have it both ways. Are they saying chronic Lyme, which as disabling an ailment as the worst diseases known to medicine just isn't worth treating? What do they recommed the suffering and dying Lyme patients do? Not my problem. Do they only represent the interests of insurance companies who just want the whole thing to go away? That's what Blumenthal's conclusion seem to indicate. To remind you: Both human and animal studies clearly document the persistence of Bb after intensive antibiotic therapy. I guess they have a selective memory for peer reviewed medical literature which negates their A priori conclusions. The don't have to practive "Evidence Based Medicine" whey they practice "Eminence Based Medicine."'splain that Lucy.

There are no diagnostic criteria for csf- guys in IDS dept in ivory tower use serum standards as absolute interpretation of csf results. Patient 3 had no oglioclonal bands present or lymphocytosis in csf. Have seen a number of European studies on them. Not sure why he got blot done- ivory tower doc 1 was neuromuscular/ ALS guy so maybe was interest area for him. But he was only taking tests for other doc so we didn't get to keep him. Sorry, said I would go but this is a very informative and interesting blog. Please kick me off if it's a conflict of interest

If your a hammer everything looks like a nail. This area will be controversial for many years to come. I don't like doing spinal taps. They hurt and they don't add much. You have to biopsy the meninges to find Lyme. Ouch.

Neuroborrelios is a clinical diagnosis. Positive serum serology is helpful. SPECT scans and MRIs as well as form neuropsychiatric testing are helpful.

That's very nice of you. Sounds like we need to find someone with deeper pockets than the insurance companies- too bad we can't get some pharm. $ interested. Those companies have some real $ and could care less about kissing someones !@# if it looks like there is a profit in it for them. The thing is there could be a huge profit in it- develope the right "test" (ie set the limits right and reinvent the wheel)and "treatment" (move a molecule and call it new) and all of a sudden a ton of patients are discovered and need to be treated. Then all the poor suffering souls you guys risk your license for could be served by the mainstream. Or at least it sounds good in theory. If you have any ideas, let me know. I have friends in a few companies. In the meantime, I have some guys in the ivory tower to educate. Someone needs to give me a good answer as to how Lymes specific antibodies end up in CSF without being in serum and how a neoplastic syndrome could be antibiotic responsive. Not you guys- we know whats up. But these folks need to get a clue and stop walking down the IDS's road. Strikes me as someone needs to think for themselves and I'm not going to let it go. I can't change the world, but MCV's got something coming. Maybe, just maybe, I can create some doubt to the head of the department as to the effectiveness of his IDS's departments reccommendations. Noone wants to look stupid in the face of reason- this guy doesn't look like he suffers fools kindly. I'm probably spitting in the wind, but I've got at least 4 neuro's here I can try and influence. Like a lawyer, create the benefit of doubt. Got him to try the Doxy (not so neurotic now that husband not fading in and out of "la-la" land)- will get him to THINK if its the last thing I do. I know- I'm joisting at windmills you guys have already hit. But you never know, maybe I will get someone using their brain and starting a revolution b/c I goaded them into it. Pride is a powerful motivation for these idiots- excuse me, the misinformed. I have no pride- I'm a simple gp who knows I'm wrong a lot when I am doing the best that medical knowledge tells me to do. I do the best I can for my patients- specialists or not. These guys may understand what is going on- at least some of them. If I fix one neurologist's thinking, I can get conservatively a couple of patients a month actually suspected and treated. Maybe a few souls in a lifetime who don't have to suffer. IF I can get the big guy at MCV doubting he knows it all, I MIGHT effect many patients outcomes. At least its worth a try. I faced off bigwigs since a senior student in vet school when they were wrong. They still remember me at meetings 17 years later. Didn't make a lot of friends- BUT have live patients to show for it. And they matter more than any stuffed shirt does. If you are in medicine, pride is foolish. You WILL be wrong over and over. Unless you can't see your patient and what they are doing. Thank you again for letting me vent thru an understanding and knowledgable group. But I will challenge our cause everywhere. Someone has got to get a clue. You shouldn't run alone. Thank God you do for people like us, but it shouldn't be that way (not really that religious but it fits). If there is ANY thing I can do about here in Richmond, it will be done. They will understand or I will die trying. I don't die. I don't suffer fools. And I don't back down. Lets see this guy give me some real explanations. I've lost nothing if he doesn't. We treat my hubby anyway. BUT, IF I can maybe we can introduce just a shadow of a doubt (which shouldn't be to hard given whats going on) , then maybe I've got a chance to save many what he's been thru. That is worth fighting for. MCV will understand if I can get to the top- and I WILL unless he's really STUPID. Will let you know tommorrow.

I know- stupidity is the norm- but justify it to me. I've got something to say. Not everyone has a crazy out of the norm doc willing to back up what they say. What does everyone else do? Die. It's wrong. I'm sorry, but the guys in the ivory tower WILL understand. Over my dead body- and you have decided it is not to die. I am getting well. I will not die. I will speak and they WILL understand. Period.I have never lost a fight yet. Hopefully, I will never have to. If I do, they will feel my wrath. At least, I may create a benefit of the doubt. But I will try. These guys are not that stupid- maybe there is hope. There is always hope until you say "the fat lady sings". The fat lady ain't singing on my shift and if I have anything to say about it, the fat lady ain't singing on nobodies shift. These guys WILL get a clue. Haven't lost yet. Ain't about TO BACK DOWN TO NOBODY. Bigwigs at MCV included. Sorry, just not brought up that way. Lets see if I can push some buttons. Got nothing to lose but a whole lotta people suffering like my husband for years. Not right. They WILL understand. I was Not brought up to be quiet. Lets see what they have to answer. Nothing ventured, nothing gained.

PPs I will goad this guy into giving you the SPEC scan you want if at all possible. Only chance is at MCV, but we'll see. Have a number of friends in NBC if I need to I can call on. Perhaps looking stupid in front of the world will turn him around. Not likely- these guys are stupid until proven otherwise. But one can only try.

Sorry- guess I'm still venting. Gotta stop that. Prepared round 1 with Ivory Tower this afternoon. It goes off by fax tommorrow. I know I'm joisting at windmills here. But if I can get just one of them to look at the studies behind the standards and think for themselves. Maybe some little part of the world will be better for it. Maybe the next guy will be spared what we have gone thru. Gotta try.

Please read what I wrote on May 28.You will have to scroll through the blog to find it. See entries in May. It is called: Why my doctor doesn't believe in Lyme disease. You have no idea what you are getting into. I think you will learn that you need to abandon mainstream medicine and work with LLMDs. Lyme is whole speciality unto itself. Even if you can get those docs to agree with the diagnosis they will not know how to evaluate it, follow it, or treat it. Lyme is a parallel universe. You might as well be talking about the man on the moon as far as they are concernced. You will learn grasshopper.

Depression, anxiety possible chronic Lyme diseaseIn 1989 I found an itchy bump on my left shoulder. When I checked this in a mirror I noticed the classic bull's eye red rash with a white hard bump in the middle where the Tick was attached. I thought at that time that it must have been a baby tick because its size was so small about the size of a poppy seed. I removed and flushed the little guy then went to my Doctor because I thought it had become infected with the rash and all. She took one look at my rash and said you have been bitten by a Deer tick and I’m going to test you for Lyme disease. She wanted to see the test results before she started treatment. On my next visit she said good news your test came back negative so I don’t need to treat you. By that time the rash was going away she said that my system must have fought off the infection. I had never heard of Lyme disease and had been active in outdoor hobbies all my life so I’ve had hundreds of Tick bites.A few months after this I started having headaches, fatigue, dizziness and depression. Up to that point in my life I can’t remember any long bouts of Depression. I lost the Job that I had during the Tick Bite so I went to the primary care physician that my Mom and Dad Used. He diagnosed me with Depression and told me that I should increase my physical activity when I feel bad take a brisk walk. I explained to him that a few months earlier I was active in group hiking, camping & climbing but now I can’t get up enough steam to get out of the chair. Finally he prescribed an Anti-Depressant don’t remember what one I have been on most of them over the years. I started having panic attacks thinking I was having a heart attack I had several normal EKG tests. I finally went to a psychologist and was diagnosed with generalized anxiety depression and was put on Imipramine and Xanax and enrolled in his medication management group I quickly realized that my condition was different than the others in my group and my primary care physician would write the same proscriptions for much less money and give me personalized care. For many years after I would have good and bad spells where I had to fight through the pain and fatigue to get out of bed and keep moving. I started to experience neurological problems such as mild Bell's palsy and paralyzed hemi diaphragm on my left side due to phrenic nerve damage (paralyzed left lung). The Radiologist who did the fluoroscopic test on my lung said to me that your symptoms are similar to his and he had chronic Lyme disease. I told him about my Tick story and he recommended I get checked out. I talked with many physicians most would test me and My test results still show negative antibodies to Lyme disease but my blood tests show signs of an infection but possibly I’m just crazyI finally found a doctor who would treat me and I have been on long-term antibiotic treatment with multiple high dose antibiotics. We switch them every few months for 2+ years now plus a host of other medications. My anxiety has been better I was off Xanax for a long time but I started having panic attacks due to my breathing problems and just got it refilled. The only Psychiatric medication so far that I can say has helped reliably and my list is a long one. I’m also on Prozac at this time.At this time I’m experiencing Depression difficulties with concentration and short term memory Brain fog, Loss of goals nothing is fun anymore, anxiety panic attacks, profound fatigue I have to fight to get things done, migrating pain in muscles and joints most often shoulders, lower to mid back, neck, wrist sometimes legs, Sleep apnea, over weight. I once had a large group of personal friends now mostly work related.

My teenager has had most of the symptoms mentioned and is being treated for lyme. She's showing much improvement after 3 mos. of doxy and zithro, thankfully, but still not up to par. She's doing the cycling thing where her symptoms worsen for 1-2 weeks out of each month. But, the cycles are not really in sync with her menses at this point. Any insight or advice? She has a great LLMD. We are thankful for all progress, but would love her to be able to get her life back 100%! I know there is light at the end of the tunnel....

Go to the ILADS website. Look in the left column. There are some printable brochures. One is titled:What every psychiatrist should know about Lyme disease. Print it out. Lyme can cause nearly every psychiatric disorder in the book.If co-infections are not addressed you may never get better. The brain effects of Lyme may also be related to chemical changes in neurotransmitter activity. One of the reasons that Rocephin is so effective may relate to its down regulation of glutamine. The damaged brain is very sensitive to gllutamine. A drug which is effective in Alzheimer's disease, Namenda works by reducing glutamine. The anti-bipolar drug Lamictal also reduces glutamine and may be helpful? Minocin has anti-inflammatory effects in the brain related to other effects. It has been found to be effective in many autoimmune and inflammatory conditions. It is being studied in neurodegenerative disorders.

The combination of Doxy and Zithro doesn't make sense to me. They both do pretty much the same thing. I like drugs related to Rocephin, which attack the cell wall (and may have positive chemical effects in the brain) with drugs which attack protein synthesis, like tetracycalines and macrolides. Psychiatric medications can be helpful. They can restore balance to disordered neurotransmitters. One should look at the various neurotransmitters, including: serotonin, norepinephrine, GABA, glutamine and others to find out which will be most effective. The goall is to eliminate the Lyme. That is a tricky business. Patients with fatigue should get sleep studies because Lyme is associated with sleep apnea which causes an amazing assortment of problems.

Thank you for your response. My previous post was pretty vague. When I mentioned that my daughter has had "most of the symptoms mentioned," I was not just referring to the post above mine; psychiatric symptoms are not her main difficulties. Before treatment she had the classical migrating pains, numbness, carpal tunnel, numerous infections, migraines, brain fog, etc. She has had some anxiety, as well, but that has not been a predominant symptom. She is tons better since starting abx. The monthly lyme flares bring out some of her previous symptoms, but in milder form, thankfully. I will check out the literature you mentioned.Your continued zeal to help patients and to educate people on lyme is much appreciated!

I believe that many of my problems are due to the 17 years that I received no real treatment for this disease. I have faith in your LLMD and I’m sure he will do what’s best for your daughter. Probably my best advice is to Have Patience with everything that she is going through. Healthy girls often have problems at her age with the physical and social changes. It’s beyond Imagination what she must be going through with Lyme.I wish there was better support groups for Lyme. Many of the meetings I have attended there where only one or two people in attendance possibly it’s hard for Lyme suffers to make it to these events.I’m in fact much better than when I started this Lyme adventure. I have had setbacks and tolerance issues with some of the medications but I keep pushing on fighting the good fight.

I read your post. I do understand very well- I have a great LLMD who has led me in all the right directions. However, grasshopper is smarter than she sounds when she's venting. I have abdandoned mainstream medicine when it comes to our treatment. However, a lot of mainstream medicine is just uneducated, not antagonistic. If approached gently, sometimes people will give new ideas some thought. When they see things work, they might decide to learn. And then maybe a few people more will not have to suffer as we have. We have have made inroads already with one neurologist- mainstream but caring and open minded enough to see his patients improving under your care. "you keep seeing that Lymes doc, if [the guy at MCV] won't follow up on this then I will". "I don't care if he only had one band- we should try to treat him" "Have that Lymes doc give me the doses that he needs and I will order it myself". He doesn't have a clue- I'll have to get him some copies of ILADS stuff as a place to start. But this is his beloved residency prof that he referred us to at the ivory tower that he is willing to over rule. Grass hopper is good with people when she needs to be and her most excellent LLMD is impressive in the records he sends. "man- where do you find this guy- I've got some patients I need to send to him"."I wonder if that guy we saw with this and that could have benefited from some antibiotics?". He's a chatty fellow and talked thru both EMG's which he should be faxing to you. Grasshopper may be a babe in the woods- but she is determined to make a difference. She has been lucky and is being helped by some wonderful people. She wants to get as much of this out into mainsteam as possible so that maybe someone who is not as lucky as she may have a chance. Grasshopper is working on the big guy at Ivory tower- he has no real interest in the fight you mention and is high enough to piss on the IDS dept if he wants to. He believes the crap hook, line, and sinker. But you just rained on his parade and are fixing his patient and grasshopper has some well crafted questions to lead him down a few paths to save face. Big people have lots of pride- easier sometimes to step on someone else than to admit you were wrong. Not me- I know I'm wrong all the time even when I'm doing my best- that would be medicine for you. In this case, IDS department is the only place to blame unless big guy is willing to take it himself. This guy is no fool- he's sharp as a tack. This is just not his area so he relies on IDS dept for advice. He has just found out science behind IDS depts recc's which he had no clue on and has been gently called to the carpet on the immaculate conception of immunity in csf (ie Lyme's specific antibodies in csf with nothing in bloodstream) We'll see- either way, grasshopper might find a chink in the system. Some heads might roll in IDS or some doubt might be entered into a former believer. Hard to explain why your TB/paraneoplastic patient is doxy responsive for someone used to knowing it all. Either wrong needs to be admitted or someone else needs to take the heat. We'll see- I know I'm joisting at windmills. But I have been joisting since vet school and I've been out 17 years now. I won as a lowly student against the top profs when they were wrong- I've mellowed a lot and have gotten craftier and smarter. And they never had enough guts to fail me as threatened- worst I ever got was a B and those were few and far between. Grasshopper knows what she's up against- grasshopper is willing to work the system for all its worth and try to win. I know I'm naive and believe in people- I don't think I'm always wrong there. There is a lot of good out there if you look for it. But I also have a very good understanding of the system and the crap that goes with it. Taking on the two named high guys would be foolish- but lets see who else we can work on. Sorry, grasshopper never did know her place. And that has served her well over the years. Its all your fault you know- you showed her what's right and what's wrong. Now she's determined to show as many people as she can what you showed her so that others may not suffer as she has. Now look what a can of worms you opened. Don't know how to do the "smile" on the computer but I am joking. Mostly.

Sorry again- I am going to need to take some anger management classes. I can't talk about this stuff without getting really mad. How do you guys deal with it? When I think of all the people out there suffering, I just want to do something about it. I look at my four little guys faces and think about what would have happened if their parents had ended up too sick to take care of them. I guess that's what you mean by grasshopper. I have a lot to learn and a lot to let go of. I'm still going to try to get the doc's I know around here to see for themselves. This stuff needs to get out into the mainstream somehow. But I can see, I'm going to have to let it go. I don't know how you guys can see this day after day. You really have my respect.

There is a mind-body connection. I like the work Deepak Chopra has done in this area. The immune system acts like a circulating nervous system.It has a remarkable, mysterious quantum intelligence, which responds to the external environment(most of which we create ourselves). For example, Chopra has done studies which show decrements in Natural Killer T cells in persons experiencing stress. Negative emotions: anger, anxiety, depression depress immune function and healing. Our world has much negativity coming from many fronts. Tuning into that which is positive helps healing and improves well being. Please compartmentalize some of that anger and tap into some of the positive engergy which exists on the other side of our dichotomous world. Psychobabble? Perhaps: but it is supported by a body of scientific research.

I am showing my age. The expression "young grasshopper" comes from early 1970's TV show with David Carradine called "Kung Fu." He is kung foo master, half Chinese and half white, on a spiritual mission in the old West. He has flashbacks of his learning from his ancient Master who calls him young grasshopper. It has to be said with a bad Chinese accent to have the right ring.

I'm not sure where my answer to your last posts went- but I remember the show and understand the reference. I think it is an apt analogy in many ways. What I have had trouble with is the newfound understanding of all of the people out there suffering and in not having a way to help. I talked about getting off my soapbox. A small light of understanding dawns on the young apprentices face. About soapboxes and the catharsis of the emotion created from dealing with and trying to help the people affected by this stuff by a caring doc.

I've figured out a way to think about all this that will work for me. I've been mad maybe twice in my life- I'm just not that way usually. Somethings wrong... I just focus on how to fix it. I have always tried to do what I can to help my own little corner of the world. But that's all- I've always felt I could do more good that way. I've been an advocate for my own patients always- but that's a little sea with little fish. Gentle words and suggestions work the best- but I'll butt heads with someone if I'm sure it needs to be done or a patient will be hurt. This a big sea with big fish type of thing now. The best I can do is what I've always done- try to help my own little corner of the world. Get my family well. Be an advocate. Let everyone I know hear what has gone on so that if they know someone who needs help, they can get them to the right place for help. If we get my hubby well enough, bring him back on a followup to all the doctors we've seen so they can see for themselves what they missed. Help them understand the signs and if they are not comfortable with the diagnosis and treatment- ok, but the disease still exists. Put your patient on Doxy if you suspect it and refer them off to a good, mainstream LLMD just like you would to any other specialist. Try to get the other doctors we have now interested in watching and learning about the process if they show any interest. Make it less mysterious and more mainstream. "Lyme land" may be where you need to go for treatment now- but its not going to help us in the end. We need to get the fight and the controversy out of this and get it more matter of factly into mainstream medicine. Most of the little fish doctors don't think they know it all and really just want to get their patient to someone who can help. They are used to referring when they don't know whats going on. Maybe there is a way to reach them. I'll think on that one and banter it around with the docs involved around here as they watch us go through the treatment process. I've got a plan- its not a big deal, but that's how I do things anyway. Emotions harnessed and dedirected in little grasshopper. Thank you wise one.